pamela

I am glad you are doing well, Tiff. Keep up the great work!! I hope you are having some help with Thanksgiving. Hope you can enjoy your food and keep your hair!!

Love you,
-Pam

Hi lostandscared,

I am very sorry to hear about your boyfriend, but happy you found this site. To answer your question, my daughter, Lauren was the one diagnosed with CC. She is only 26 years old, 25 when diagnosed. She started out having pain in her upper right side. We figured it was gall bladder problems. She had an ultrasound and bloodwork. The doctor never called about the ultrasound so we figured everything was fine. The nurse did call and say her liver enzymes were high, but he wasn’t worried about it. We had no clue what he was even talking about at that time and just forgot about it. About three months later the pain was more constant, she could only eat small amounts of food and would get full really fast, her back hurt, and she lost 40 pounds. She asked me to call and get her in to the doctor because she had a feeling something was really wrong. Luckily, the first doctor she went to was on vacation and she was sent to a different facility to see a young, wonderful doctor who ordered a CT scan immediately. It showed masses in her liver. He sent her to a GI doctor that wanted her to see a specialist because he didn’t know what it was. We went to the University of Michigan and saw a liver surgeon. He ordered a CT, MRI, and PET scan. She also had a liver biopsy. It came back that she had advanced CC. Her largest tumor was 19cm. and various small ones. Had I known what I do now, I would have demanded the ultrasound report from the first doctor and questioned the elevated liver enzymes. But at the time, we had no clue it could be serious and had never heard of CC. It was the last thing we would have thought was wrong. I don’t really know if there is any way to detect it early. That is why so many people are diagnosed late stage. I wouldn’t beat yourself up over this. Your boyfriend had routine ultrasounds. You did everything you were supposed to. It is just a rotten cancer that sneaks up on people without much warning. I am very sorry and I hope your boyfriend finds a treatment that will shrink his tumors and perhaps a transplant or resection can be done. Please let us know how he is doing. All the best.

-Pam

Hi Mark,

Just my opinion, but I really don’t like when doctors give a timetable of how long someone has to live. If your Dad feels good, that is great. I couldn’t imagine having my daughter’s doctor tell me when she is going to leave us. I would not want that hanging over her head or our family’s. I know about the whole 5 yr. survival thing. I think everyone gets told that. I choose to remain positive and hopeful. Like Lainy said, I think I would get a second opinion with someone that treats a lot of people with CC. I’m sure that your friend that is a doctor has good intentions, but might not be the right person to help your Dad. Wishing you and your Dad all the best.

-Pam

Hi Dina,

I am sorry to hear about your Mom. My daughter is the one with cancer. I can only tell you about her experience with Xeloda. Every cycle of Xeloda she is on seems different from the last. Sometimes she gets sore, red soles of her feet, sometimes not. Sometimes she feels nauseous, sometimes not. Sometimes she is super tired and sometimes not. What I am trying to say is that there is no set side effect with her on this chemo. It is always different. She is on it right now and is experiencing extreme fatigue. Every time she sits down, she falls asleep. In the past, she has been on Gemzar, Cisplatin, 5-FU, and Oxaliplatin all at different times, some together. She didn’t have any problems with them except for low platelets with Cisplatin and an allergic reaction with Oxaliplatin on the 6th infusion. I don’t know the percentage of effectiveness of Xeloda for this cancer. If you google Xeloda you can probably get the % of side effects. No chemo is easy to take. It is just something we try in hopes of shrinkage and feeling better. I think the decision is your Mom’s. She will know if she wants to keep trying chemo or if she doesn’t. I wish her all the best and you as well. Please let us know how she is doing.

Love, -Pam

Happy Birthday to dear Kris. Thank you so much for lighting a candle for everyone on this site, Hans. I have read many of Kris’s posts and I know I would have loved her. All the best to you, Hans.

Love, -Pam

Hi Lynn,

My daughter had to have her chemo delayed a few times because of low platelets. The first time we thought it was the end of the world, but later came to realize that it happens to many people and you just have to take it in stride, rest, and they usually come back up. Lauren swears that Gatorade makes her platelets go up, but her doctor always just laughs at her. I think it is purely coincidence, but we won’t tell her that. I hope George is able to have chemo next time. Take care.

Love, -Pam

Hi Leah,

I wanted to welcome you to this site. I am sorry to hear about your Dad. The only one of the three my daughter has been on was 5-FU. Hers was given over 48 hours. She wore a little fanny pack that held a pump and her chemo. I have heard of Leucovorin, but don’t know much about it. I had never heard of Camptosar, so I looked it up and it is also called Irinotecan, which I know some people on this site are on. I’m sure others that are familiar with this chemo regime will help you out. With the 5-FU, Lauren had no trouble with it. I learned from a nurse at the hospital how to disconnect it and flush my daughter’s port. It was very easy. That way we didn’t have to make a special trip to the hospital. That would not have been practical since we are 3 1/2 hours away!! I wish your Dad all the best with his new plan. Please keep us informed as to how he is doing.

-Pam